MsTi's Thoughts

08/29/2013 – Where Overachiever is not all that

I will stop going by days now.  Time moves on, either very quick or very slow depending on where I am standing.  That would be a good definition of relativity.

I am 6 days out now from surgery.  6 days, it still seems like forever.  But, I notice that my body has a different opinion.  My back is stressed and my breast where the cancer is, is sore.  I have trouble focusing.  But, still life goes on.

So far this month, I have started my MBA and finished 3 of my classes (I do love competency based schooling), dealt with work, and prepared for surgery.  I even survived my mid-year review.

I think I need to work at being less of an over achiever.

If the world rated my stress level right now, I think I am at a 8.  I need to sit in the quiet and read and not think.

August 29th, 2013 by MsTiara

Day 31 – 08/18/2013 Thursday, August 29, 2013

It is hard to believe it has almost been a month since I was diagnosed with cancer.  It feels like a year.  So much has happened and yet I feel like I am just not accomplishing anything at all.  I just want the surgery here and done with.  Then move on to the next part of my life, recovery.

I received another appointment from the Mayo Clinic, this one is a couple weeks after surgery and is for occupational/physical therapy.  I am glad that the Mayo is ahead of the game and looking at the long term and how to heal and grow with a part of me removed and another item in its place.  Or maybe this is to help with the potential of Lymphedema, whichever it is, it is more than I have read other people receiving during their recover.

I read Angelina Jolie’s overview on her clinics website.  The one piece I took away was the recommended vitamin regimen as well as the follow up to get the anesthesia out of the system.  I will be printing it up and following it.

August 18th, 2013 by MsTiara

Day 22 – 08/09/2013

My new reality.

I met with the plastic surgeon and oncology surgeon. Both were running an hour late which was definitely no fun and highly stressful.  You sit in the waiting areas and look around at the people.  One of the other people in the room had been through surgery and you could tell was going through radiation.  Drains were still in and here hair had been cut off.  You want to look and acknowledge, but you don’t want it to be you.

The plastic surgeon was wonderful, but sadly it didn’t go as I hoped.  I wanted to have the DIEP surgery, keep my own flesh and not have any foreign plastic things in my body.  However, because of the multitude of previous surgeries in the stomach area as well as not having enough flesh to get the results we need, I am not a good candidate.  First time I have ever been told I was too skinny.  Also, there goes my tummy tuck.

Surprisingly, up to that point I had held it together pretty well.  But, then the realization came that I would have to have plastic implants stuck within me for the rest of my life.  That reality was too much for me and I cried.  It isn’t a bad thing, but I won’t have my own flesh anymore.

Why do I feel so weak when I cry?  This is a tough part of life to go through.  I am losing my breasts, my nipples.  There is serious pain and a life-long commitment to having this new body, new reality and then you add in the diagnosis of cancer and the burden the C word carries.  I had every right to be emotional and have to deal with the drama it entails.

Technically it is easy.  They remove all my tissue, pull a lymph node to test it to see if the cancer has spread, open up my muscle wall and place a holder (we won’t talk about what that is made of), then insert the tissue expander and finally close me up.  Heal a bit and then every week add in some saline till the desire size is reached, heal up and then remove the tissue expander and place in the implants.  About 6 months from the start of surgery you have breasts.

The new breasts will be gummy implants and look and feel pretty close to actual breasts.  But, they will be something stuck in my body.  They even come with their own warranty.

Breathe, it is better than cancer.

Talking about cancer, so I also met with my surgical oncologist.  Paget’s disease of the breast is not being classified as ‘not really cancer’.  What?  I their mind it is Stage 0 cancer and in the new classification that isn’t cancer.  This is a game that the doctors are playing.  The treatment is a lumpectomy (or mastectomy) and radiation over the whole breast.  But, it isn’t cancer unless what is underneath is not Stage 0 and then it is.  I am thinking that if you have to cut it out and kill it off then I am going to continue to call it cancer.

We decided not to go with an MRI since I will be having a bilateral mastectomy.  But, I still worry what the mammogram didn’t catch.

My new norm is stress.  You live in a world that is slightly cocooned.  You are tired and time seems to stretch forever.

August 9th, 2013 by MsTiara

Day 21 – 08/08/2013

Dear Friends:   I wanted to let you all know that I have been diagnosed with a rare form of Breast Cancer called Paget’s Disease of the breast.  The good news is that I have excellent medical care and we found it very early on and everything is looking positive about it not being invasive.

I am scheduled for surgery on September 4th.

It is a hard decision to make, whether or not to share something so personal with the world.  I used to believe that I would be the person who kept it all internal and be strong on my own.  However, I have learned that having the support of loved ones and friends is something all of us need.

I ask two things:

The first, is that you be on top of your health and follow up on your mammograms.  For the men on my friends list, remind your loved ones to get theirs.  But, that you also go beyond your mammograms and follow up if you feel that anything isn’t quite right.  My mammogram showed no issues and was perfectly clear.  However, I had a change to my skin which proved to be cancerous.

The second thing I would like to ask is that if all of my friends could send out some positive energy into the world.  Whatever your religious or non-religious beliefs, just send some wonderful positive energy out into the world and it will make a difference to everyone who is going through a tough and stressful time.

August 8th, 2013 by MsTiara

Day 16 – 08/03/2013

Been out in the RV for the weekend.  Gail suggested it and it has been a wonderful distraction.  Climbing hills, collecting rocks, hitting my hammer against stones hoping to break them open and find treasure.

We have adventured further afield.  Down into West Central, NM.  We just finished up a half hour in the hot springs looking up at a star filled night sky and watching the lightning in the distance.  So relaxing.

Tomorrow we head back to my place and reality.

One thing occurred last week that is settling into my soul and making me sad and even a bit angry.

One of the hard decisions you make when you find out you have cancer is who to tell, when to tell, and how to tell them.  It is a very personal choice and there are no right or wrong answers.  I knew I wanted to tell my close circle of friends immediately.  I needed the support, the laughter, and the shoulder to cry on.  When I told each one, their support was exactly what I needed and expected.  They allowed me to breakdown in tears, be strong, be afraid, be optimistic and be scared.  Each and every one filled me with love and support.  There was only one friend left to tell.  When they reached out to me it was a conversation that lacked depth.  When I mentioned I was dealing with health problems it was a brush off.  “You are on top of it I am sure.”  Then goodbye.

I know that time separates us and changes us, but I believe there are certain friends in life who will always be there.  When they are not, you feel deep sadness in your soul.  A loss that goes beyond death because you will always have hope it will come back where in death you have finality.  I can write about why this loss/disconnect of a friend happened and I can mourn it.  But, the time in my life has finally arrived where I stop living for other people’s emotions and expectations.  Where I finally stop jumping through mental gymnastics wondering why I am not what they want me to be.  Perspective can be a harsh taskmaster.

I have debated whether or not to make my cancer public.  Social media these days can either be your friend or the base of your existence.  But, I know that cancer may be a part of me but the battle is fought and won with positive energy and I need all the positive thoughts I can get.  So, after I meet with the oncologists and plastic surgeon I will let people know via social media and ask for their positive thoughts to the universe.

People wonder how I can accept prayers and not be of said religion.  I liken it to the prayer wheels and flags in Tibet and Bhutan.  It doesn’t matter who or how you pray, but every positive thought you release into the universe makes a difference.

August 3rd, 2013 by MsTiara

Day 14 – 08/01/2013

I started on my MBA today.  I also got the call from Mayo to schedule my Oncology surgeon and Plastic surgeon appointments.

The more I talk about solving the problem and the next steps, the less anxious I become.  I think it has to do with being in control of my destiny instead of flotsam that is battered around by the tides.

August 1st, 2013 by MsTiara

Day 13 – 07/31/2013

Being nice, follow up and persistence pays off.  I think the most important thing is being nice.

I followed up and tried to pre-schedule my MRI and plastic surgeon appointments.  I know I am having surgery and I have come to terms with a double mastectomy.  I just need to move forward, have the appointments and get the surgery completed.  It is very simple.  Well, as simple as cancer can be.

My appointment with the surgeon wasn’t until August 12th, 3 weeks from being told you have breast cancer till knowing anything.  3 weeks can seem like a lifetime.  I have started to get used to the feeling of having my heart in my throat and a constant underlying anxiety.  Doing anything to distract myself.  I have even started an exercise program.  Yoga in the morning and Tai Chin in the evening.

Luckily for me the oncology surgeon at the Mayo had a cancellation and because we had been working on appointment scheduling for my plastic surgeon, they called me and asked if I wanted it.  Of course I did!  So, now I am going in on the 6th.  It feels like a huge relief off my shoulders.  One week less of initial anxiety.

Now I just have the weekend to wait.  But, I am going off in the RV for camping and rock hunting.

July 31st, 2013 by MsTiara

Day 10 – 07/28/2013

Whatever you do, don’t…

Read the forums and blogs.  Seriously, if you want to drive yourself crazy, get frustrated and get angry that is the place to go.

I read one woman’s saga and came out the other side thankful for the Mayo Clinic followed up by a theory that if you are a person who is negative and the sky is always falling that cancer enhances that feeling.  You do not automatically become a spiritual person who starts to live life to its fullest.

However, you do start eating better.  Fruits, vegetables, and organic food make its way into your refrigerator and body as if the cancer will magically go away in weeks just by eating better.

That is one of the items that is so confusing to me.  I eat well, I am not obese, in relatively good shape.  I have never smoked, am a light drinker and have never done drugs.  I am young and I have a rare form of breast cancer.

So life goes on.

July 28th, 2013 by MsTiara

Day 7 – 07/25/2013

Today was unfocused.  I didn’t have any meeting deadlines or travel that was focusing me NOT to dwell.  So instead I find myself reading the pathology report or researching or staring into the inside of my head.

I have researched wigs and breast reconstruction all trying to give me the feeling that whatever is thrown my way I can deal with it.

I decided to move forward with my MBA.  I start on August 1st.  I am hoping this is the right choice.  I only need to finish 3 classes in 6 months and I KNOW I can do that.

July 25th, 2013 by MsTiara

Day 6 – 07/24/2013

For a little while you forget.  You get caught in all the day to day minutiae of life.  Important meetings, focus on work, just regular life.  But, then you remember…  You have Cancer.

You wait for the call, next steps, appointments.  The things you need to do to get better.  “Make it Go Away!” you cry out.  Get it out of my body.  It took years to manifest but now you want it gone.  As if between one breath and the next it will become invasive and you will never get rid of it.

A travel day, back from Oakland to home.  I am tired, a bit stressed, but I should consider it a good day.  I didn’t cry.

I find myself looking at it clinically.  As if I could divorce myself from the emotions and by doing it solve the underlying problems.

Thank goodness for guided meditation before bed.  It helps me sleep.

I am not sure that Paget’s Disease makes this easy.  You KNOW you have cancer.  The biopsy says you do.  But, you don’t know what the underlying cancer is so you can’t figure out what your options are.  My appointment isn’t until August 12th and that appointment will determine the plan of finding out what my underlying cancer is.  Is it in situ, invasive, am I the 1% of all Paget’s that doesn’t have an underlying cancer?  I want the tests and the answers but have to wait for 2 1/2 weeks.

I spoke to the insurance company today and started to learn what is/is not covered and how much is this likely to cost me.  Thank Goddess for excellent health insurance supplied by my company.  I have a cap on test expenses, the doctors’ appointments are all covered as long as In Network and no life time limit.  It is good when you find out an illness isn’t going to bankrupt you or wipe out your life savings.

July 24th, 2013 by MsTiara

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